Medical Ethics

Background Rapid ethical access to personal health information to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences. Methods A total of 183 patients in the pandemic cohort completed the survey via email, and responses were (...) compared to the distinct pre-pandemic cohort ; all were patients of a large Canadian cancer center. The survey covered broad versus study-specific consent; opt-in versus opt-out contact approach; levels of comfort sharing with different recipients; perceptions of commercialization; and options to track use of information and be notified of results. Four focus groups were subsequently conducted to elucidate reasons motivating dominant preferences. Results Patients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples, sharing information with the health care institution, sharing information with researchers at other hospitals, sharing PHI provincially, nationally and internationally compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts. Significantly more pandemic cohort patients expressed a wish to track use of PHI, and to be notified of results. Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved. Conclusions In pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort remained unchanged. Focus groups identified that the ability to track and receive results of studies using one’s PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises. (shrink)

The essay outlines the ways in which narrative approaches to COVID-19 can draw on imaginative literature and critical oral history to resist the ‘closure’ often offered by cultural representations of epidemics. To support this goal, it analyses science and speculative fiction by Alejandro Morales and Tananarive Due in terms of how these works create alternative temporalities, which undermine colonial and racist medical discourse. The essay then examines a new archive of emerging autobiographical illness narratives, namely online Facebook posts and oral (...) history samples by 'long COVID' survivors, for their alternate temporalities of illness. (shrink)

In this paper, we argue that providers who conscientiously refuse to provide legal and professionally accepted medical care are not always morally required to refer their patients to willing providers. Indeed, we will argue that refusing to refer is morally admirable in certain instances. In making the case, we show that belief in a sweeping moral duty to refer depends on an implicit assumption that the procedures sanctioned by legal and professional norms are ethically permissible. Focusing on examples of female (...) genital cutting, clitoridectomy and ‘normalizing’ surgery for children with intersex traits, we argue that this assumption is untenable and that providers are not morally required to refer when refusing to perform genuinely unethical procedures. The fact that acceptance of our thesis would force us to face the challenge of distinguishing between ethical and unethical medical practices is a virtue. This is the central task of medical ethics, and we must confront it rather than evade it. (shrink)

Introduction Numerous guidelines and policies for ethical research practice have evolved over time, how this translates to global health practice in resource-constrained settings is unclear. The purpose of this paper is to describe how the concept of ancillary care has evolved over time and how it is included in the ethics guidelines and policy documents that guide the conduct of research in the global south with both an international focus and providing a specific example of Malawi, where the first author (...) lives and works, as a case study. Methods Discourse analysis was conducted on 34 international ethics guidelines and policy documents. Documents were purposively selected if they contained a set of key terms that reflect the concept of ancillary care. Following a process of inductive discourse analysis, five key interrelated text phrases relating to ancillary care were extracted from the documents. The evolution of these phrases over time was explored as they represented the development of the concept of ancillary care as a component of ethical health research guidance and practice. Results We found key interrelated phrases that represent discourses regarding the evolution of ancillary care including participant protection; provide care as appropriate; supererogation; patient needs prevail over science; and ancillary care as an obligation. Arguments for the provision of ancillary care were characterised by safeguarding the safety, health rights and well-being of study participants. However, despite the evolution of discourse around ethical obligations to provide ancillary care, this is rarely made explicit within guidance documents, leaving interpretive space for differential application in practice. Conclusion While there have been major changes to the ethics guidance that reflect significant evolution in the ethical conduct of research, the specific vocabulary or language used to explain the ethics of researchers' ancillary care obligations to the health needs of their research participants, lacks clarity and consistency. As a result, the concept of ancillary care continues to be under-represented in local ethical guidelines and regulations, with no clear directives for country-level research ethics committees to apply in regulating ancillary care responsibilities. (shrink)

Background: The concept of digital twins has great potential for transforming the existing health care system by making it more personalized. As a convergence of health care, artificial intelligence, and information and communication technologies, personalized health care services that are developed under the concept of digital twins raise a myriad of ethical issues. Although some of the ethical issues are known to researchers working on digital health and personalized medicine, currently, there is no comprehensive review that maps the major ethical (...) risks of digital twins for personalized health care services. Objective: This study aims to fill the research gap by identifying the major ethical risks of digital twins for personalized health care services. We first propose a working definition for digital twins for personalized health care services to facilitate future discussions on the ethical issues related to these emerging digital health services. We then develop a process-oriented ethical map to identify the major ethical risks in each of the different data processing phases. Methods: We resorted to the literature on eHealth, personalized medicine, precision medicine, and information engineering to identify potential issues and developed a process-oriented ethical map to structure the inquiry in a more systematic way. The ethical map allows us to see how each of the major ethical concerns emerges during the process of transforming raw data into valuable information. Developers of a digital twin for personalized health care service may use this map to identify ethical risks during the development stage in a more systematic way and can proactively address them. Results: This paper provides a working definition of digital twins for personalized health care services by identifying 3 features that distinguish the new application from other eHealth services. On the basis of the working definition, this paper further layouts 10 major operational problems and the corresponding ethical risks. Conclusions: It is challenging to address all the major ethical risks that a digital twin for a personalized health care service might encounter proactively without a conceptual map at hand. The process-oriented ethical map we propose here can assist the developers of digital twins for personalized health care services in analyzing ethical risks in a more systematic manner. (shrink)

The rare but severe cerebral venous thrombosis occurring in some AstraZeneca vaccine recipients has prompted some governments to suspend part of their COVID-19 vaccination programmes. Such suspensions have faced various challenges from both scientific and ethical angles. Most of the criticisms against such suspensions follow a consequentialist approach, arguing that the suspension will lead to more harm than benefits. In this paper, I propose a rights-based argument against the suspension of the vaccine rollouts amid this highly time-sensitive combat of COVID-19. (...) I argue that by suspending a vaccine rollout, a government infringes people's right to take the risks they deem worth taking for their health. I also consider four potential objections to my argument and explain why none of them undermines my argument. (shrink)

Since the approval of COVID-19 vaccines, international efforts have intensified on vaccination schemes perceived as the only light at the end of the tunnel. Governments are working tirelessly to scale up the number of vaccinated people, just as vaccine manufacturers are stretching their facilities to meet the increasing demand for doses. The international community is trying to help the poorest countries in the world by improving vaccine supplies and removing obstacles. In this regard, India and South Africa have applied to (...) World Trade Organisation to waive vaccine-related intellectual property rights. The proposal has sparked off academic debates as to its merit. This article addresses the waiver controversy. Following a critical review of both dimensions of the controversy, the article concentrates on the extent to which the waiver application contradicts the theoretical justification of the patent system. It concludes that the concerns raised over the conflict between the waiver proposal and the patent right philosophy are indefensible. (shrink)

This article puts critical disability studies and global health into conversation around the phenomenon of scarf injury in Bangladesh. Scarf injury occurs when a woman wearing a long, traditional scarf called an orna rides in a recently introduced autorickshaw with a design flaw that allows the orna to become entangled in the vehicle’s driveshaft. Caught in the engine, the orna pulls the woman’s neck into hyperextension, causing a debilitating high cervical spinal cord injury and quadriplegia. The circumstances of the scarf (...) injury reveal the need for more critical cultural analysis than the fields of global health and rehabilitation typically offer. First, the fatal design flaw of the vehicle reflects different norms of gender and dress in China, where the vehicle is manufactured, versus Bangladesh, where the vehicle is purchased at a low price and assembled on-site—a situation that calls transnational capitalist modes of production and exchange into question. Second, the experiences of women with scarf injuries entail many challenges beyond the injury itself: the transition to life with disability following the rehabilitation period is made more difficult by negative perceptions of disability, lack of resources and accessible infrastructure, and cultural norms of gender and class in Bangladesh. Our cross-disciplinary conversation about women with scarf injuries, involving critical disability studies, global health and rehabilitation experts, exposes the shortcomings of each of these fields but also illustrates the urgent need for deeper and more purposeful collaborations. We, therefore, argue that the developing subfield of global health humanities should include purposeful integration of a humanities-based critical disability studies methodology. (shrink)

The aim of this article is to study the discursive construction of disability that takes place in the vaccine-autism controversy from the 1990s to 2000s, and an attempt to develop a more holistic framework to understand vaccine decisions and their motivations. It is argued that the debate over vaccines produces knowledge and meanings about disability, and that the vaccine-autism controversy is kept alive largely because of how it reproduces stigmatising accounts of disability and autism. The suggestion is that if the (...) stigmatising elements of disability were removed in the debate over vaccines, there would be no controversy to keep alive in the broader vaccine debate. Hence, this article is an attempt to increase disability cultural competence in the media and among health authorities and health professionals and therethrough broaden the shared understanding of what it means to be or become disabled. By investigating the driving forces for past vaccine controversies, the goal is to find more constructive ways forward in present day and future debates over vaccines. (shrink)

In the memoir Tears of Salt: A Doctor’s Story, Pietro Bartolo relates visceral descriptions of illness, injury and death endured by refugees on their journey of escape to the shores of Lampedusa in the Mediterranean. The medical gaze of the doctor/author further complicates the political and philosophical discourse of mass migration, foregrounding and calling into question the myriad ways in which the migrating human body is subjugated to forms of structural violence that render it ungrievable and inhuman. The migrating body, (...) a production of and outcast from nation-states, is destined to make its way to news outlets where its suffering is gazed upon, sympathised with and later forgotten about. The surge of images revealing the realities of migrating bodies afflicted with pain, disease, trauma and sexual assault is illustrative of the asymmetric power of biopolitics at work, in which some bodies are, according to the formulations of Judith Butler and Giorgio Agamben, allowed to die or made killable. This paper will examine issues of illness, death and dying in relation to Bartolo’s accounts of refugees in order to observe what is gained and what is lost in applying a medical gaze to the ‘refugee crisis’. In addition to the memoir, we examine the scholarship of violence against the refugee body, the realities of ignoring their pain and how these exploited bodies are portrayed within a global narrative. This article reconfigures the detachment between the human as a socially constructed centre of subjectivity and the body in pain. The corporeality of illness and death that migrants face positions them in an abject position and distances them farther from the rhetoric of human rights. The ontological being of these individuals in medical discourse rarely goes beyond acknowledging that it is normal and expected for these bodies to be in pain. In what ways can we in the humanities gear the discussion towards the raw physicality of fragmentation, distortion and rejection of refugees and immigrants? What role can such a view play in building an ethic of lasting care for the dispossessed? Our research addresses these questions through our reading of the memoir. (shrink)

Hastings Center Report, Volume 52, Issue 2, Page 58-59, March‐April 2022.

Bioethics, Volume 36, Issue 4, Page 474-475, May 2022.

When Jennifer Blumenthal-Barby was a bioethics intern at the Cleveland Clinic while she was still a graduate student, she was puzzled by the decision making of some patients at the clinic. For exam...

This book encompasses two inter-related disciplines of health law and medical ethics applicable to Singapore. Apart from Singapore legal materials, it draws upon relevant case precedents and statutory developments from other common law countries and incorporates recommendations and reports by health-related bodies, agencies and committees. The book is written in an accessible manner suitable for tertiary students. It should also serve as a useful resource for medico-legal practitioners, academics and healthcare professionals who wish to keep abreast of the evolving legal (...) and ethical developments concerning health and medicine. (shrink)

The phrase ‘person‐centred care’ (PCC) reminds us that the fundamental philosophical goal of caring for people is to uphold or promote their personhood. However, such an idea has translated into promoting individualist notions of autonomy, empowerment and personal responsibility in the context of consumerism and neoliberalism, which is problematic both conceptually and practically. From a conceptual standpoint, it ignores the fact that humans are social, historical and biographical beings, and instead assumes an essentialist or idealized concept of personhood in which (...) a person is viewed as an individual static object. From a practical standpoint, the application of such a concept of personhood can lead to neglect of a person's fundamental care needs and exacerbate the problems of social inequity, in particular for older people and people with dementia. Therefore, we argue that our understanding of PCC must instead be based on a dynamic concept of personhood that integrates the relevant social, relational, temporal and biographical dimensions. We propose that the correct concept of personhood in PCC is one in which persons are understood as socially embedded, relational and temporally extended subjects rather than merely individual, autonomous, asocial and atemporal objects. We then present a reconceptualization of the fundamental philosophical goal of PCC as promoting selfhood rather than personhood. Such a reconceptualization avoids the problems that beset the concept of personhood and its application in PCC, while also providing a philosophical foundation for the growing body of empirical literature that emphasizes the psychosocial, relational, subjective and biographical dimensions of PCC. (shrink)

The diagnostic and treatment possibilities made possible by the development and subsequent mainstreaming of clinical genomics services have the potential to profoundly change the experiences of families affected by rare genetic conditions. Understanding the potentials of genomic medicine requires that we consider the perspectives of those who engage with such services; there are substantial social implications involved. There are increasing calls to think more creatively, and draw on more participatory approaches, in evoking rich accounts of lived experience. In this article, (...) we discuss our rationale for, and experiences of, using ‘participatory-writing’ to understand the diverse, variable and multilayered everyday lives of families and how these correspond with the emerging, rapidly changing and complex field of genomic medicine. Participatory-writing has many benefits as a method for social inquiry. Writing can be expressive and self-revelatory, providing insight into personal and sensitive topics. Writing together produces new conversations and relationships. Pieces written by participants have the potential to affect readers, evoking and enlivening research and prompting professional change. Working with a writing tutor, we organised a participatory-writing programme for families touched by genetic conditions. This involved a series of workshops with an emphasis on building confidence in expressing lived experience through experimenting with different writing techniques. Afterwards we arranged reflective interviews with participants. We drew on dialogical narrative analysis to engage with participants’ written pieces, and highlight what everyday life is like for the people who live with, and care for, those with genetic conditions. The stories produced through our writing-groups unfold the implications of new genomic technologies, illuminating how genomics acts to reconfigure aspects of people’s lives outside of the clinic, while simultaneously existing as a sociotechnical frame that can eclipse the wider contexts, challenges and liveliness of life with rare genetic conditions. (shrink)

Introduction There is a paramount need for moral development for pharmacists and pharmacy students to practice the patient-centered profession. We aimed to explore the current situational judgment utilizing ethical reasoning among undergraduate pharmacy students. Methods A set of ten ethical dilemmas, representing potential real-life situations that the students come across in the university and may face in the future as a pharmacist were developed by a team of students, academic staff, and stakeholders. These ethical dilemmas were validated, checked for accuracy, (...) and piloted. An online questionnaire was created consisting of these ten scenarios as open-ended questions and administered to fourth year and fifth year PharmD students in a public university located at the city of Mecca, Saudi Arabia, asking them how they would react in that situation. Responses of the participants were analyzed using thematic analysis independently by four researchers and inter-rater agreement were achieved through consensus. Results Out of 205, 186 students completed the questionnaire with a response rate of 90.7%. Analysis and resulted in the generation of 32 codes, which were then categorized into seven overarching themes: student engagement, social and professional responsibility, academic integrity, legal obligation, moral obligation, signposting, and moral engagement and patient safety. Conclusions Undergraduate pharmacy students experience complex state of mind in connection with ethical reasoning. The participants’ situational judgment were driven by cultural norm, authority, and responsibility. Student engagement is also affected by the state of mind and feelings of mutual trust, perceived cultural influence and peer pressure. The students were prone to seek help from university administrators or teachers when faced with situations in which they were helpless. (shrink)

Medical ethics is normally taught in a combination of three ways: through discussions of normative theories and principles; through for-and-against debating of topics; or through case studies. I want to argue that a fourth approach might be better, and should be used more: teaching medical ethics through medical law. Medical law is already deeply imbued with ethical concepts, principles and reasons, and allows the discussion of ethics through the “back door,” as it were. The two greatest advantages of the law (...) are its familiar authority, especially among the disengaged medical students who have little interest or respect for the subject of ethics; and its focus on the reality of the people and the tragedies discussed. Finally, I argue that medical law, unlike ethics, allows more efficient and more detailed MCQ assessment. (shrink)

Commitment devices can help people overcome self-control problems to act on their plans and preferences. In these arrangements, people willingly make one of their options worse in order to change their own future behaviour, often by setting aside a sum of money that they will forfeit it if they fail to complete the planned action. Such applications of behavioural science have been used to help people stick to healthier lifestyle choices, overcome addictions and adhere to medication; they are acceptable to (...) many patients and even relatively small sums can be effective. Some authors have objected to the use of nudges in healthcare. Engelen has listed nine potential objections to nudges in relation to means, ends and agents. These objections are shown to lack force in the context of CDs. Instead, an analysis specific to the ethical issues in CDs is employed. CDs exclude certain groups including so-called ‘naifs’ and risk increasing health inequality. CDs may promote the wrong behaviour and people might legitimately change their minds. Intermediaries might encounter perverse incentives. Approaches to overcoming these problems are described and eight key ethical considerations for those considering implementing CDs in the future are described. Altogether this paper illustrates the advantages of appraising the ethics of behavioural science in medicine on a case-by-case basis. (shrink)

Authoritarian governments are characterised by political systems with concentrated and centralised power. Healthcare is a critical component of any state. Given the powers of an authoritarian regime, we consider the opportunities they possess to derive good health outcomes. The 2019 Varsity Medical Ethics Debate convened on the motion: ‘This house believes authoritarian government is the route to good health outcomes’ with Oxford as the Proposition and Cambridge as the Opposition. This article summarises and extends key arguments made during the 11th (...) annual debate between medical students from the Universities of Oxford and Cambridge. By contrasting the principles underlying authoritarianism and democracy, it enables a discussion into how they translate into healthcare provision and the outcomes derived. Based on the foundation of said principles, an exploration of select cases represents examples of applications and the results. We analyse the past, present and future implications on the basis of fundamental patient-centred care. (shrink)

Respect for patient autonomy is a central principle of medical ethics. However, there are important unresolved questions about the characteristics of an autonomous decision, and whether some autonomous preferences should be subject to more scrutiny than others.In this paper, we consider whether inappropriately adaptive preferences—preferences that are based on and that may perpetuate social injustice—should be categorised as autonomous in a way that gives them normative authority. Some philosophers have argued that inappropriately adaptive preferences do not have normative authority, because (...) they are only a reflection of a person’s social context and not of their true self. Under this view, medical professionals who refuse to carry out actions which are based on inappropriately adaptive preferences are not in fact violating their patient’s autonomy. However, we argue that it is very difficult to articulate a systematic and principled distinction between normal autonomous preferences and inappropriately adaptive preferences, especially if this distinction needs to be useful for clinicians in real-life situations. This makes it difficult to argue that inappropriately adaptive preferences are straightforwardly non-autonomous.Given this problem, we argue that there are significant theoretical issues with contemporary understandings of autonomy in bioethics. We discuss what this might mean for the practice of medicine and for medical ethics education. (shrink)

The historiography of medicine has shifted from narratives of inevitable progress, authored mainly by the medical profession, to a more complex, analytical approach in which historians place medicine in its social context. However, the history of surgery has lagged behind somewhat; Christopher Lawrence suggests this is because the recent focus on the construction of medical knowledge does not incorporate the practical aspects of surgery, which are difficult to extract from their previous linear narrative. Thomas Schlich likewise recognises that surgery is (...) both knowledge and skill—therefore more of a ‘craft’ than medicine. A possible solution is aligning the history of surgery with the history of technology: analysing the interplay of instruments and human activity.This case study uses the history of endoscopic endonasal pituitary surgery to explore the historiography of surgical innovation, in the context of its heavy reliance on both technology and interdisciplinary divisions of labour. Re-enactment, evolutionary frameworks and using Social Construction of Technology methods all require close collaboration between historian and surgeon to bridge the gap between scholarship and tacit knowledge. (shrink)

This paper considers the relation between medical ethics and common morality, professional norms, and moral philosophy. It proceeds by analyzing two recent book-length critical analyses of this relationship by Bob Baker in “The Structure of Moral Revolutions—Studies of Changes in the Morality of Abortion, Death, and the Bioethics Revolution” and Rosamond Rhodes in “The Trusted Doctor—Medical Ethics and Professionalism.” It argues that despite the strengths of these critical arguments, there is nevertheless a relationship between ME, understood as the professional ethics (...) of the healthcare professions, and both CM and moral philosophy. It also argues that ME cannot and should not be understood purely as the internally developed professional norms of the medical or healthcare professions. (shrink)

In British medical research, the transition from abortion to miscarriage, to describe early pregnancy loss, occurred in the late twentieth century. A 1985 letter to The Lancet by a group of eminent obstetricians was long considered unilaterally to have prompted this shift. More recently, however, this conclusion was challenged, and it was suggested instead that the transition constituted natural language change, as medical professionals responded to their changing social and professional milieu. This paper, however, uses a pioneering statistical modelling technique (...) to demonstrate decisively that the 1985 Lancet letter was indeed pivotal in promoting miscarriage as an acceptable variant for use in medical journals. The abrupt nature of the vocabulary shift in question is made clear through the pioneering application of the statistical modelling technique change point analysis. This methodological innovation demonstrates clearly the decisive impact of the 1985 letter, while also showcasing the remarkable suitability of change point analysis to the study of such sudden linguistic changes. With an increasing emphasis on patient-centred models of care, it is likely that further prescriptive interventions relating to medical language will be made in coming years. Indeed, beyond the medical profession, there are already increasing calls for further reform to the language of pregnancy loss. To understand how such language reforms might successfully be enacted, and to ensure that linguistic prescriptivism is employed only where change is appropriate, proportionate, and evidence-based, it is necessary to understand fully this historical precedent. Against the backdrop of recent ‘lay’ demands for reforms, this paper affirms the decisive impact of the 1985 intervention, and considers the ramifications of this finding for the study of linguistic prescriptivism and future medical language reform. (shrink)

Antimicrobial resistance is often framed as a One Health issue, premised on the interdependence between human, animal and environmental health. Despite this framing, the focus across policymaking, implementation and the ethics of AMR remains anthropocentric in practice, with human health taking priority over the health of non-human animals and the environment, both of which mostly appear as secondary elements to be adjusted to minimise impact on human populations. This perpetuates cross-sectoral asymmetries whereby human health institutions have access to bigger budgets (...) and technical support, limiting the ability of agricultural, animal health or environmental institutions to effectively implement policy initiatives. In this article, we review these asymmetries from an ethical perspective. Through a review and analysis of contemporary literature on the ethics of AMR, we demonstrate how the ethical challenges and tensions raised still emerge from an anthropocentric framing, and argue that such literature fails to address the problematic health hierarchies that underlie policies and ethics of AMR. As a consequence, they fail to provide the necessary tools to ethically evaluate the more-than-human challenges that the long list of actors involved in managing AMR face in their everyday practices. In response to such shortcomings, and to make sense of these challenges and tensions, this article develops an ethical framework based on relationality, care ethics and ambivalence that attends to the more-than-human character of AMR. We formulate this approach without overlooking everyday challenges of implementation by putting the framework in conversation with concrete situations from precarious settings in West Africa. This article concludes by arguing that a useful AMR ethics framework needs to consider and take seriously non-human others as an integral part of both health and disease in any given ecology. (shrink)

The general reluctance of medical practitioners in postwar Britain to ‘speak of sex’ during healthcare consultations increasingly became a matter of professional concern in the wake of legal reforms and social changes during the 1960s affecting sexual expression and reproductive health, and a growing optimism in the early 1970s concerning the treatment of sexual difficulties. In the mid-1970s, largely as a result of the work of Dr Elizabeth Stanley, Sexual Attitude Reassessment seminars were introduced from the USA into some medical (...) schools in Britain, usually as a part of courses that were intended to help students develop the attitudes, knowledge and skills needed to facilitate the discussion of patients’ sexual concerns and to treat ‘simple’ sexual problems. SAR seminars entailed the showing of sexually explicit films as a stimulus for exploring, in small discussion groups, the sexual attitudes and beliefs of students, and the potential impact of these on future professional practice. Drawing on publications by Dr Elizabeth Stanley as well as archival materials, this article examines the aims of SAR seminars, the rationale provided for their inclusion in the undergraduate medical curriculum, and the ‘permission-giving’, educative approach to sexual counselling that SAR seminars supported. It also explores some of the barriers to the more widespread use of such seminars in medical education in Britain at this time. The behaviourally informed ‘permission-giving’ approach to sexual counselling promoted by Stanley and others is also considered alongside the more psychoanalytically informed ‘interpretative’ form of sexual counselling provided by some Family Planning Association doctors from the late 1950s onwards. This comparative analysis reveals contrasting perceptions concerning the role of medical practitioners’ emotions in sexual counselling and elucidates some of the reasons for the fragmented and limited development of this aspect of medical practice in Britain. (shrink)

This article aims to theorise the human experiences of time during the lockdown and the COVID-19 pandemic through the verbo-visual exposition of graphic medicine that combines the medium of comics and healthcare. The event of the pandemic has not only bifurcated our perception of time in terms of a ‘before’ and an ‘after’ but also complicated our awareness and experience of time. Put differently, an epochal transformation caused by pandemics has shifted our temporal experience from the calendar/clock time to a (...) queer time situated outside of formal time-related constructions. The pandemic also implies a dismantling and rearranging of the fundamental structures of time within which human beings interacted with the world. Such a discontinuity in the linear trajectory of chronological time engenders an epistemic and ontological reconfiguration of the very sense of time itself. Through a phenomenological close reading of various sequential comics, single panelled images and graphic medical narratives, this article investigates how visual narratives in the form of comics communicate the passage of time. Categorically speaking, pandemic graphic narratives on time draw attention to stagnation, repetition, acceleration, loss of referentiality and the queerness of pandemic time. The article argues that a shift in the perception of time precipitates an altered spatio-temporal awareness that informs postpandemic discourses and power structures. (shrink)

The role of design and materials in the enactment and experience of healthcare has gained increasing attention across the fields of evidence-based design, architecture, anthropology, sociology and cultural geography. Evidence-based design, specifically, seeks to understand the ways in which the built environment can support the healing process. In the context of palliative care, however, the very measure of healing differs vastly. Physicians Mount and Kearney suggest that ‘it is possible to die healed’, and that such healing can be facilitated through (...) the provision of ‘a secure environment grounded in a sense of connectedness’. Acknowledging this critical difference raises important questions around the various ways through which the built environment might support healing, but also about the potential of architecture to impart care. This paper reports on 15 interviews with architects, experienced in the design of palliative care settings, from the UK, USA and Australia, to provide a deeper understanding of the questions being asked within the briefing processes for these facilities, the intentions embedded in the ways that architects respond, and the kinds of compromises deemed allowable within the procurement process. Our findings suggest that palliative care architects often respond to two briefs, one explicit and the other unspoken. Design responses in relation to the first include: formally expressing a differentiation in the philosophy of care, attention to quality, extending comfort and providing ‘moments’. The second relates to the unburdening of palliative care facilities from their associative baggage and responding to the tension between the physical and imaginative inhabitation of space. In revealing the presence of this hidden brief, and the relationship between the two, this paper invites a broader discussion regarding the capacity of architecture to support palliative care patients, their families and staff. (shrink)

This paper brings together fifth-wave public health theory and a decolonised approach to the human informed by the Caribbean thinker, Sylvia Wynter, and the primary exponent of African Humanism, Es’kia Mpahlele. Sub-Saharan indigenous ways of thinking the human as co-constitutive in a subject we might call human-animal-‘environment’, in conjunction with the subcontinent’s experiences of colonial damage in disease ‘prevention’ and ‘treatment’, demonstrate the lack of genuine engagement with Indigenous wisdom in Western medical practice.The paper offers a decolonial reading of pandemic (...) history, focused primarily on the human immunodefiency virus, the severe acute respiratory syndrome of 2003 caused by the SARS Covid 1 virus and COVID-19, caused by the SARS COVID 2 virus to demonstrate the importance of the co-constitutive subject in understanding the genesis of these pandemics as driven by colonial-capitalism. I emphasise that prevention will indeed take the kinds of massive changes proposed by fifth-wave public health theory. However, I differ from the proponents of that theory in an insistence that the new kind of thinking of the human Hanlon et al call for, has already been conceived: just not within the confines of the normative human of Western culture.I illustrate that Western Global Health approaches remain constitutionally ‘deaf’ to approaches that, although the West may not understand this to be the case, arise from fundamentally different—and extra-anthropocentric—notions of the human. In this context, Man as Wynter names Him is a subject ripe for decolonisation, rather than a premier site of capitalist development, including that of healthcare provision.Recognising that most of us are not individually able to change the structural violence of the colonial capitalist system in which Global Health practices are embedded, I conclude with implications drawn from my argument for quotidian practices that enable healthcare providers see their actions within a harm reduction paradigm, in the context of communities experiencing intergenerational impoverishment consequent on colonial violence. (shrink)

To use narrative medicine as a means for action towards social justice in medical education, we need a renewal of our pedagogical methods that grapples not just with the worlds concocted within a text, but also our own world beyond the text. We propose a model for narrative medicine pedagogy that is oriented towards abolition. First, the composition of the classroom and syllabus must employ radical inclusion through recruitment of diverse voices and selection of diverse texts. After a traditional close (...) reading is initiated, conscious expansion should take place through introduction of a text’s context and current social structures. Whenever internal and external conflicts arise, active self-interrogation should be encouraged through José Esteban Muñoz’s ‘disidentification’.We present relevant critiques of narrative medicine, case studies from workshop experiences, and close readings of selected narrative medicine texts to unmask limitations in the standard narrative medicine workshop format and illustrate the utility of our abolitionist model. The model we propose offers methods for disrupting long-standing patterns of inclusion and radically transforming the structure of spaces and ideas produced within them. When new texts are added to the syllabus, they should be accompanied by hermeneutics that can adequately attend to them. Abolitionist narrative medicine pedagogy should stimulate practitioners to examine their own role in social structures that surround the text and the setting of close reading and, ultimately, to dismantle harmful structures. We offer strategies for confronting discomfort without requiring an abandonment of identity, context or content. Instead, holding complexity works towards the long-term aim of transforming practitioners to think critically about structural violence that prevents universal and equitable access to compassionate healthcare. Using this model for abolition, we hope practitioners of narrative medicine will be equipped with more dynamic tools to engage with texts and patients within and beyond the scope of the narrative medicine workshop. (shrink)

Obituaries of people who died from an opioid overdose represent a new territory for understanding cultural narratives of the US opioid epidemic. Drawing on textual analysis of 30 opioid overdose obituaries published on Legacy.com between 2015 and 2020, we describe a prototypical narrative conveyed through opioid overdose obituaries, which renders symbolic meaning through the voices of the bereaved. Obituary authors reimagine their subjects as tragic heroes and reconstitute opioid addiction as a curse, plight or affliction that befalls its victims. Many (...) of these obituaries invoke the language of public health, calling for reform, action or general awareness so other families might avoid the havoc and heartbreak of opioid addiction. We argue that obituaries contribute to broader cultural narratives of opioid addiction by reproducing tragic storylines, vindicating and humanising the deceased, framing opioid addiction as a societal, rather than individual, problem, and medicalising addiction as a brain disease beyond a person’s control. Obituary texts thus intertwine a personal story with a broader societal health crisis, transforming stories of the deceased into cautionary tales and public health warnings. (shrink)